Depressing Of bornchatesis, PLease help

Hi

I am in France too, I also have bronchectasis plus other lung problems. I suppose you have had all the scans etc. I find sleeping on a wedge pillow a great help and also for me steroids control the cough somewhat.

This year we haven't had a cold winter at all.For me the heat of summer is bad, I prefer the -15° because you can put a scarf round your face to warm the air before it hits your lungs.

Hello Nero66376

I was diagnosed with bronchiectasis and Tracheobronchomalacia back in 2009. It is a horrible disease and I can tell you there is a lot of us in the same boat, but not enough obviously because it seems they (whoever they are) are not doing enough research to help find some type of relief. There is no cure for it!

BUT, with a regular regiment, you can keep it from getting worse. And one can live with it. It's just that cough, that horrible incessant cough. It just will not stop. And one does not sleep well, and we all know, we need our sleep to keep from getting sick.

The lungs are as you know a self cleaning organ that makes mucus to clean out dust and other stuff. With bronchiectasis, the lungs think there is an something that needs to be cleaned out so it creates more mucus and it just keeps doing this and we have to cough to get that crap out. It goes on and on. You would need to have a CAT scan to make sure this is bronchiectasis, it will not show up on just a regular x-ray. I was informed that weather has nothing to do with this disease. Allergies can make more mucus for those with them, but for us, it can make our lungs worse and any extra mucus can lead to infection which can lead to exacerbation. When we have these episodes of exacerbation, they call them flare-ups. You want to keep these flare-ups to a minimum. Your lungs can be cleaned out by having a bronchoscopy, which when I had these, I felt a little relief for about 2-3 months without as much mucus. Also a bronchoscopy can tell the doctors how much damage is done while they are in there. They should do a culture of what they found and in my case they found the bacteria pseudomonas aeruginosa had colonized in my lungs. Once this colonizes in your lungs, it's there forever. You can take meds during the flare-ups, but it will always be there. This is a very critical time for us that have these issues to make sure we get plenty of rest and stay away from folks with covid-19. I was informed by my pulmonary doctor that it would be deadly for me if I came down with this. So please, please be very careful and wear your mask while out around others.

If you would like to know the daily routine and medications, let me know and I will send to you. It became my new normal way of life. I even worked full time until 2013 until my health just couldn't do it any longer.

I wish you the best here, keep your chin up and positive mental attitude.

Hi, I'm 72 and have had bronchiectasis since I was 1 year old. I've always coughed stuff up. You do not say if you do physiotherapy exercises to bring the rubbish up. Its a case of getting your bottom higher than your head (drape yourself over the wedge already advised for sleep, and perhaps another pillow) and allow time for the stuff to drain out. May seem strange at first but you get used to it. I now do ex first thing after waking (half an hour), another session before lunch and another before going to bed. Its a pain but it is essential to get that stuff up. Look on the internet, plenty of instruction. Also, get plenty of rest. The cold weather is bad for the likes of us, but that's how it is. If you don't already do the drainage exercises, please try them. Gill

So sorry to hear your are suffering so much but with these disease is unfortunate that they are bot coming out with antibiotics that can help prevent the paeudomonas from residing in our lungs so the cough is not so bothersome the children with cystics fibrosis have something but the pulmonologist don't even want to try so pts like have to suffer needlessly Ask your doctor for a vest it vibrates tour chest and help loosen the mucus, when i can do it twice a day it helps esp when there are no flares ups Also ask fir 7% saline that hell also loosen n the mucus plug Some people, i using tuneric one person in this forum suggested using it with pepper, my doctor suggested NAC and i just started that Most of the bacteria during flare ups only respond to iv antibiotics so maybe after a sputum culture your doc will determine which. Most of all pray that is how i have been dealing with mine fir since 2013 as well as other ailments I found a ot who fasenra, dupixwnt has worked for and j am about to try dupixent after my iv antibiotics course. I am seeing an hematologist because my immunoglobulins were low specifically IGGM and i have getting the infusion every month and my numbera have gone up a bit from 4 to 9 and i believe that had made a difference this year on how sick i was when i had this recent flare up I wish you all the best Keep a positive mental attitude and a gratitude journal because we do still have a lot to be grateful for

Dear ALL,

Thanks for your valuable information.

RIght now i am suffering the facts:

i live in south asian country, but i came to France for my training purpose and now stuck due to cant return home as flights are off.

As i am facing now, I cant go to doctor here because my health insurance already expired and its expensive here i guess.Please can anyone tell me how much the amount can be to check gp and lungs x ray's.?

I am actually thinking to buy a oximeter to check the oxygen saturation of my blood , to find actually whats going on. I walk at least 30 mins and run a day but never feel shortness of breath. I sometime feel shortness of breath when my talking to someone but little. My pulse rate averages 85-100 bpm all the day (resting).Some times heart beat rate flares up but no shortness of breath.I always do heater in room and keep all window closed.From begining i had no problem but now i think its suffocating so i open always my windows. The actual thing irritates me about there is always clear watery mucus comes in my throat then my nose clears up .again blocked .And from lungs there is very little sputum comes white after i wake up in morning , but i need to try coughing to bring it out. I had never dry cough and wet cough.I try to do myself cough to bring out.I have telemedicined my country doctor he said there might be little infection in my airways but not severe.He is saying i am overthinking it and causing own problems.

Now i am searching oximeter in France where i can buy , so i can check the lungs condition, but i need to fly to my own country and check.

I have searched youtube and found some physio therapy but nothing comes from lungs except throat some little clear mucus.

so can a oximeter solve to check the problems?

thanks a lot everyone.